Kara Swanson's Brain Injury Blog

February 16, 2009

They Didn’t Care

When I was first injured thirteen years ago, everything in my life got so flipped upside down and tossed aside and thrown against the wall.   If there was a tornado gnashing in my head, there was a hurricane raging through the rest of my version of normal.

There was no money coming in.  I couldn’t pay my bills and I needed the people who wanted to take back my house and turn off my utilities  to understand that it wasn’t my fault the insurance companies were fighting.  It wasn’t my fault that no money came for seven months.   It wasn’t my fault someone ran a red light going 50 mph.  They didn’t care.

I spent six hopeful weeks with a balance specialist who, I was told, was “the best around.”  I never even saw him except for a brief hello that first day and an exit interview I will never forget.   He told me my therapy was a complete success.  I told him it was not.  I pointed out that I had not improved at all in my ability to balance.  He told me he “simply cannot put that type of thing” in my report.   When I asked him where do I go from here, he said, “You’re crippled.  Get used to it.” (Yes, he did say that!)   He then clap-closed my file and left the room.  Left me in tears.  I was incredulous.  He didn’t care.

When I lost my balance and fell on some ice in front of a group of high school kids, they looked and laughed and kept on walking, even as it was apparent I could not get myself up from the ice.   They didn’t care.

I was starting to think, my God!  This incredible, horrific, life-changing thing has happened to me and (what the hell is wrong with you people!?!) nobody cared…

And then I found out how wonderfully, lovingly, generously and humorously nobody cared.

Because, after some of the friends left and some of the fringe people in my life fell away, those who stayed and those who arrived were glaring, fabulous reminders of the glorious fact that no, nobody cared.

When my legs go out on me, my friends and my family each grab an arm and just about drag me to wherever we are headed.   They don’t care.

And when I get stuck on a word, they jump in and start calling out possible words I’m trying to say like it’s a game show and they’re telling me,  “stop talking your nonsense” through fits of laughter and we’re amazed when “warm noodles” comes out as “woodles” and when “look at the big black dog” comes out as “blig blog blig blog blig blog!”   and we’re hysterically laughing.  They don’t care.

When I have to lay down or I have to cut short our events, when I “stop recording” as I like to call my cognitive ability that fades late in the day, when I can’t make a safe decision or get myself back to my hotel room or my house,  they gather me up and arrange our plans and make my decisions and keep me safe and deliver me wherever I can’t get to on my own.

Because they don’t care.

I have the most incredible group of people in my life.  Early in my recovery I was taunted, scarred and devastated  by people who seemingly didn’t care.  And now I am blessed, warmed and so utterly, ridiculously appreciative for those who I am absolutely certain don’t care.

I hope you all have lives full of people who don’t care.  I hope you all find people to pull close and celebrate.  Those people to laugh and cry and share and struggle with.  Giggle with till there are tears in your eyes. 

To be real with.  To be the flawed, failing, sometimes flailing people we all are.  Grab on and hold tight and share this crazy ride of life.   Once you find yourself surrounded and loved by people who don’t care how you walk or talk or remember or forget or stumble or mumble or bumble through life’s folly, you are the rich of the rich.   It’s like eating chocolate pudding in a field of four leaf clovers.   With bunnies.  🙂

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February 11, 2009

Who Are We Envying Again?

I know I’ve written about this before but it keeps coming up for so many people in my community of brain injury survivors.  I keep hearing them bitterly, sadly, angrily lament how they want to be “normal”.   Like them

Everywhere you look are those who have not suffered traumatic brain injury.  The normal.  The them!   Shining from those coveted spots on the inside of well where the “better” sport enviable lives walled off from those of us pressing our faces up against the glass.

I saw one of those enviable well people yesterday.  He was walking along cleaning his ears out with his car keys.   Then there was the man who called 911 from a fast food restaurant because they had run out of lemonade.  Or the woman who has made her breasts into triple K’s.  Or another, a woman, who gave birth to octuplets with six kids already waiting at home.   Yet another got laid off from his job at GM with two kids in college, his mortgage upside down and  two car loans behind in payments when his COBRA bills will total  more than the unemployment he will get.

Who are we envying again?

Worse, a friend of mine’s 17 year-old cousin was fatally shot in the neck while standing on his porch a few weeks back.   A couple of nights ago a  teenager from my old high school was driving a car that ended up crashing, killing her younger sister.  My brother knows a  woman who found her sister sitting up dead in a chair not six months after her brother was killed in a car crash.  A 93 year-old man froze to death in his own home because he couldn’t pay his heating bill.  A woman, by the time she died at 48 of cancer, had already lost her husband and four brothers.

Would you trade your injury to walk in their shoes?  Any of them?  I’ll take my injury every day of the week and twice on Sunday, thank you.

Simply put, comparison has no place in successful recovery.  It’s not fair to compare yourself to who you were before your injury.   Would you expect someone who’s lost his legs to compare how fast he runs now to when he had them?  Would you think less of a person’s handshake if they no longer had hands?

It’s not fair to compare yourself to people without brain injury because it simply sets you up for depressing self pity.  Yes, this injury IS hard as hell and worse, at times.  It’s an invisible monster no one should have to find under their bed.  It’s already taken so much; we don’t need to be giving it more.

But, if you’re going to compare yourself to those without brain injury, then you need to be fair and include those with Stage Four cancer and those who have just lost a child in a car accident.   It’s not “all better” without brain injury.  I’m sure they’d gladly change places.

Because our injuries are largely invisibile, many of us have been accused of malingering or faking our symptoms.   We have been told it’s “all in our heads”.  Funny, when you think about it.

The irony is that….the only thing we really need to  heal in our heads is our hearts.    We don’t need the ability to walk without a cane or a wheelchair to successfully recover.  We don’t need the ability to speak without losing words here and there.  We don’t need the ability to make it through a long day without suffering cognitive fatigue….

In the big pot of stew, those are  pretty small potatoes.

We do need to heal our hearts though.  Make no mistake.  Successful recovery simply cannot happen without curing our broken hearts.  And, for that wonderful essential healing to begin, it only takes one day of reading the newspaper to find a hundred different ways our situations could be worse.

The people I mentioned earlier, including the teens, died.   “They had their whole lives ahead of them”, as we say.  

They were the “normal”, the fortunate, the well, the lucky.  And they’re gone now.  Already.  Slipped into history.  Into soon-yellowing pictures and fading slowly and silently from the memories of those who loved them and miss them terribly. 

It’s time to realize how fortunate we are.  With all the challenges.  With all the broken dreams and disappointments.   With the faulty short-term memories and the lousy balance and the stuck speech and the canes and the wheelchairs and all the bloody rest of it. 

My God, we are fortunate!!!  We still have life!  A life before us.   However long it’s gifted.  A  life to make whatever we want of it.   A life to choose every day to embrace. 

A life pretty darned enviable, if you ask me.

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